I just wanted to make sure that any pregnant ladies diagnosed with breast canc are aware of the American charity, Hope for Two. They have loads of info and stories of women being diagnosed with cancer whilst pregnant and having treatment and chemo before baby is born. Here is a link t an article about it:
The article contains photos of happy healthy babies who have come through unscathed. Hope this helps someone at some stage. We've had three YBCN (UK) babies born in last first six months, all doing fine. We've a few more due soon. Lots of pregnant ladies with breast cancer it seems :-(.
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I'm really sorry to read about your recurrence, and I'm sorry that nobody in a similar situation to you has seen your post yet to give you some comfort. I do have some young friends who have had similar recurrences. We have a Facebook group which is just for young women with breast cancer and as well as the main group, we have various sub groups including one for ladies who have a recurrence of their breast cancer. Our youngest member in that group is 21, but there are quite a few ladies in their twenties as well as their 30s too. I assume you are quite young in BC terms given your user name and that you posted in the young women's section.
Peer support is so important when you are facing these things, so I hope you get to talk to someone in your own position soon. Meanwhile you would be most welcome to join us on Facebook in our secret group. There is a threading the younger women's section of this forum that I posted a
few days ago at our Facebook group (Younger breast cancer network UK)
if u fancy finding out a bit more about us.
Meanwhile, the staff on the helpline here at BCC are so so so kind and helpful, so that may help you, plus BCC do a peer support which you could ask them about and there is a secondaries /recurrences live chat every week which I haven't used myself but which sounds really useful. I hope you find some BC friends support soon, it's a toughie to go through this
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I forgot to say, a lot of our members have joined Facebook just to use our group, so don't worry if you aren't on it yet, it's easy and you can set your security settings so nobody need ever know you have joined FB! also, it's not that tricky technically. I am a massive technical incompetent and how I managed to set up an online network for breast cancer continues to amaze me on a daily basis, so if I , with my technical skills, can do that then you, with yours, can join Facebook! X
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I just wanted to let everybody know about our group. I've previously posted a thread but thought a fresh one would be appropriate to celebrate our six months up and running.
In March 2010, I was diagnosed with breast cancer at age 36, with two pre school age sons, no family history and no risk factors. I was given a Breast Cancer Care information pack by my breast care nurse and found my ways to these forums pretty quickly. The support was invaluable. I met a quite a lot of ladies here who are still my friends, and we went through every step of the process together. One in particular, Midge, became one of my closest friends. We realised just how valuable peer support was for women our age going through a diagnosis and treatment, especially given that you feel so different from your peers in your normal world and so different to the other patients in the medical world.
We attended one of BCC's/Lavender Trust's younger women's forums in Manchester. If you don't know already, they are a two day residential event in a nice hotel, in various cities across the UK, and you get to meet loads of other young women who are within three years of diagnosis, and there are experts on hand giving talks about fertility, diet, exercise, menopausal symptoms, relationships etc. I'd heartily advise any young woman reading this to go on one if they can (hopefully someone from the moderating team will even post a link to the current list of forums ?).
Anyway, we met a group of other young women, one of whom had the fab idea of setting up a secret Facebook group so we could all easily stay in touch. I realised from attending this event that, at the very time I felt horribly isolated and in need of local friends my age dealing with this same trauma, there were other girls all around Manchester, where I live, dealing with it in isolation too.
Given the ongoing support our little Facebook group was giving to our little band of forum attendees, I decided to try and use a similar idea to link other young women from Manchester together, so they didn't feel as
isolated as I had felt. I had always felt very welcome and comfortable on the BCC chat forums, so I set up a Manchester network secret group n Facebook and told people about it here.
Within a few days, it was abundantly clear to Midge and I that we would have to ditch the Manchester and make it a UK group, as we were inundated with requests to join from young ladies across the country. We renamed ourselves " Younger Breast Cancer Network (UK)", set up a public Facebook page and asked ladies to message us there so we could join them to the main group. In the six months which we have been running, we have just shy of 400 members in our secret chat group, and the group is busy at all hours, day and night.
We have had to set up sub groups now, as we are so busy! Everybody has to be in the main group, but we also have entirely separate secret groups for certain things. These include groups for those with recurrences or a secondary diagnosis, for members who are past their main active treatment and want to stay in touch but not be reminded of the difficulties of dx and active treatment 24/7, those untreated in discussing research/evidence papers/articles, publicity, awareness and media and administration. We also have time out rooms for any members who feel particularly overwhelmed at given points. The group is too large to manage alone now, so some of our longer term members have been kind enough to accept admin responsibilities. We are currently organising fundraising ring fenced for younger women's services/research (eg. BCC's Lavender Trust), an awareness campaign and publicity to let girls across the oncology units know we exist.
The research shows that psychological outcomes can be worse for younger women, aft a breast cancer diagnosis, and that peer support is essential. That's why forums like this and like our FB group are so essential. The criteria to join the secret FB group of YBCN (UK) is that you are UK resident or have very strong links to UK (as treatment differs so much from country to country), and that you are a younger woman with a breast cancer diagnosis, which we class as generally under the national breast screening age of 47, but do look at individual circumstances as and when necessary. It doesn't matter if your diagnosis was a few years ago, or if you have a secondary diagnosis now as we will add you to the main
group and then any relevant subgroups.
Our members tend to talk about fertility, infertility, early menopause, dealing with young families, implications at work/on their careers, fundraising for younger women's services and younger women's awareness, as well as a whole host of other breast cancer and non breast cancer topics. The ability to post photos is really useful, especially to see how the cold cap has worked for people or how long hair regrowth takes. It is a secret group, so your posts can only be seen by other members of the individual groups, and not by your whole Facebook friend list or on google.
It is this privacy which is the main benefit to most of our members, as we have to discuss heartbreaking topics like abortions in early pregnancy, the loss of a sex life to a new bride and young mums receiving a secondary diagnosis, and we find our members can talk freely about things they just couldn't share in public.
We know our criteria does exclude older women, and although we fervently hope that everybody facing breast cancer gets the support that they sorely need, we are afraid we have to be quite strict on admitting members as we don't want to water down the main benefit and purpose of the group, which is to provide peer support and a network for younger women who are feeling isolated, and to enable them to meet local girls and women just like them who might be living just round the corner from them.
We have members ranging from 21 upwards, if you fit the criteria and would like to join, just follow the link (which I know is the old name but won't seem to allow itself to be changed for some technical reason! ) .
And, before I go, I'd like to say a HUGE thank you to Breast Cancer Care's team who have supported us in setting up our group, provided sound advice when we have struggled, and have let us discuss our group on their forum. We could not have done this without BCC (not least because that's how we all met!) and I would urge readers to keep using the BCC forums and services (especially the younger women's services!!!) as they will no doubt prove as invaluable to you as they have been for us,
Thanks for reading,
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Hiya, that's the link for our Facebook page. It's the public page, so if you send us a private message on it we can add you to the private chat group. There's over 360 of us younger women there now so I'm sure you'll find someone to chat to pretty easily there! Just tell us your age, where youlive, a bit about your diagnosis and where you heard about us. We ask everyone this to ensure they meet the criteria for the private group and so we have an idea where new members are up to, which helps us support people a bit better. Xxx
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Hi Clare, if you scroll through this thread, you'll come to a link for the Facebook public page. Once you are on the page, send us a private message expelling about your diagnosis, age, where you live and where you heard about us and then we can start the ball rolling to add you to the secret invite only chat group x
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I've not spotted any comment about Chris Evans, Gary Barlow, James may, Proff Brian Cox fund-raising day today, just for BCC, so thought I'd put a link up to their Facebook page as it explains it and people might be interested. Sorry if it's already been discussed and I've just missed it! Basically they are driving a pink rolls royce from Lands end to John o'groats today, stopping off en route in (I think) Bristol, Birmingham, Warrington, Glasgow (?) ....you'd best check though cos I might have misremembered that! We can turn up and support them and wearing pink gives you a chance to be picked from the crowd too. Then, afte this launch, I understand that the car is available to be hired out for the rest of the year. The target for fundraising is £1million.
It's worth having a look at the page, if only to stare at the lovely Gary Barlow for a bit, whilst justifying it as 'for charity'.......
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Hiya, ive no expereince of zoladex but tught this thread might help you a bit perhaps:
I can vouch for the fantasticalness of the Facebook group btw, being the founding member and all......
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I've edited my original response as I was blunt with my views on the first post. However, the general gist was that I wasn't very impressed with the idea of a husband talking about leaving his wife 8 weeks after her cancer diagnosis because HE was finding it hard going.
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I'm really sorry to hear about your diagnosis, and especially just a short time after having your new baby. Your hormones must be all over the place, and you'll have been 'new baby' exhausted even before this news came along to knock you sideways.
Although it may feel like you are alone now, the truth is that there are (unfortunately) quite a lot of us younger women with breast cancer knocking about. I was diagnosed three years ago at aged 36 and know full well the feelings you are going through now. My boys were 4&2 and I couldn't see that I'd be around in a year for them, never mind three years. But now *touches lots of wood* I feel back to being and looking and feeling like me, my boys are 5&7, and I've just had my three year check up and mammogram which were fine.
The BCC site is a brilliant resource and place to chat. It was literally m life line through treatment, and I have made a few very very good friends. Peer support is crucial to helping you through this in my view, but because we are a smaller percentage of breast cancer patients, it can be very hard to cross paths with other young women at then hospitals etc. BCC run younger women's forums in hotels around the country where experts explain various things eg. Fertility, diet, menopausal symptoms etc, and you get to meet real life women going through the same as you are. They are free (charity funded) and brilliant.
Also, in October last year, I set up a Facebook group for younger UK
based ladies who have been diagnosed with breast cancer. I've been inundated with requests to join, and we have nearly 350 members now. A lot of them have very direct experience of pregnancy/new baby and breast cancer and it's a frequent topic of conversation. We've had two babies born to recently diagnosed members in the last month or so, and another due soon!
You would be very very welcome to join us. We are called Younger Breast Cancer Network (UK), and have a public page on Facebook where you can send us a private message asking to join, then we can add you to the secret private chat group where only other members can see your posts rather than then whole of Facebook/google. There is a thread in the younger women's pages of this site about it, I'll bump it up for you.
You really are not alone, but I know it feels like it. My advice would be to take each day as it comes, concentrate on the next thing ahead rather than worrying about future steps, keep talking and cry if you want to, and accept any help for childcare/house stuff that is offered. Take care, and be kind to yourself,
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Hi everyone, this is the link you need to take you to our Facebook page. Since starting this thread, our group has gone from strength to strength, such that we now have 330 members in just the few months since octiber 2012. We add new members daily.
The group started off to link younger women with breast cancer around Manchester together. It became clear within a day or two that there was an overwhelming need for our group nationwide as we were inundated with requests, so we swapped the 'manchester' to 'uk' and went from there!
Our members are in their twenties, thirties, early and mid forties and are UK based with a personal breast cancer diagnosis. We talk about serious breast cancer stuff sometimes, but also chat about normal everyday stuff and post photos etc too. We have a separate group that ladies with recurrences or advanced breast cancer can join, but that's in addition to the main group where everyone mostly chats. We have a research group too, where we can post and chat about latest research, and members can opt to join that if they want to. All of groups are 'secret' groups which mean the can only be read by other group members, and don't appear on search engines.
To join, you need to send a private message on our Younger Breast Cancer Network (UK) page (link above). Hope it helps some of you xxx
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